Families and clinicians press for study of PANS/PANDAS prevalence in psychiatric and therapeutic school settings
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Summary
Dozens of family members, clinicians and young people testified in support of S.1415, which would direct the Department of Mental Health and Department of Education to study how many children in therapeutic day schools and psychiatric hospitals may have PANS/PANDAS and to recommend changes in screening and service coordination.
A large panel of parents, clinicians, educators and young people gave emotional testimony asking the committee to approve S.1415, a resolve directing agencies to study the prevalence of PANS/PANDAS and recommend measures to improve screening and care coordination for children with infection‑triggered neuroimmune psychiatric syndromes.
Speakers described repeated misdiagnosis, long waits for specialist care, high out‑of‑pocket costs and, in some cases, traumatic encounters with emergency and psychiatric systems. Multiple parents and young people described sudden behavioral and cognitive decline following infections and said that early medical diagnosis and immune‑targeting therapies produced substantial recovery in individual cases.
Several clinicians and advocates told the committee that the disorder straddles medical and psychiatric disciplines and that some agency rules currently exclude children with underlying medical diagnoses from particular services, creating a “catch‑22” that denies families access to coordinated care. Panelists urged DMH, DESE and other agencies to train staff, include PANS/PANDAS awareness in screening for high‑risk settings and ensure families can obtain appropriate medical evaluation without losing access to therapeutic or educational supports.
Young adult Ian Couch and teen Peyton Lerner gave firsthand accounts of regression, hospitalization and eventual recovery after receiving appropriate medical treatment. Parents and clinicians described substantial educational and social consequences—missed school years, out‑of‑district placements and family financial strain. Witnesses asked the committee to require agencies to inventory affected populations in psychiatric hospitals and therapeutic day schools and to recommend changes to reduce misdiagnosis, ensure access to medical evaluation and coordinate care across systems.
No formal committee action on S.1415 was recorded during the hearing.